A compassionate choice
Photo by Matheus Ferrero on Unsplash
Last week, I had a long conversation with a patient and other members of her family about their Mom’s current condition and what should they be doing for her at this stage of her life. For context, her mother is unable to make decisions for herself, has altered mental status and can no longer eat.
With 30+ years of experience, these conversations are never easy. Often there is tremendous friction if there are members of the family that want “to do everything” and others who only want their loved one to “not suffer anymore.” And as you can imagine, this can lead to a lot of friction and arguing, which only makes the situation worse.
So, what is Hospice Care?
Hospice care refers to providing compassionate care to those who are suffering an incurable illness, in an effort to alleviate suffering, both mental and physical, for the patient and their family members. Patients are eligible for hospice care if they are deemed to have less than six months to live due to a terminal illness. That is any terminal illness, not just cancer. So a patient with chronic kidney failure, end stage COPD, advanced cardiomyopathy or someone with advanced dementia could qualify for hospice care.
Hospice care can be provided in someone’s home if they have someone with them 24 hours a day, or in a hospital setting, or at a dedicated Hospice facility.
The Hospice team will provide for virtually everything the patient needs, even at their home. This might include a hospital bed, bedside commodes, and an emergency medicine pack that has essential pain relieving medicines etc, so that if a patient needs them, they are readily on hand.
Just as important, the hospice team will provide all the necessary nursing and aide assistance necessary, commensurate with the patient’s condition. In other words, if the patient is at home, a nurse may come to visit for brief visits, or may spend hours there, or even render around the clock care if the patient is deteriorating and needs it.
Hospice does not-
Provide tube feedings or IV infusions
Continue to do blood testing or MRI’s, cat scans etc
Administer antibiotics, chemotherapy, etc.
Why not tube feedings or IV infusions of fluids? This is probably the most difficult thing for people to wrap their heads around.
I explain to families that the intent of hospice is to alleviate suffering, not prolong it. By giving IV’s and feeding tubes, etc, we are only prolonging the inevitable. If you think about it, the natural history of many illnesses is that we become so debilitated that we are too weak to eat or drink. Often, as a result of decreased intake, patients will drift into a coma and die a peaceful death. Before we had all this technology, this is how our ancestors died in the past- peacefully with their loved ones at their side.
On top of all that, studies have shown that feeding tubes increase the likelihood of patients regurgitating the feedings and getting the liquids into their lungs in what is known as aspiration pneumonia.
So what happens if after six months the patient is still alive? They can be re-certified to continue hospice care by their personal doctor or the hospice doctor.
I also tell patients and families that your decision is not set in stone. If at some time you change your mind and want to come off of hospice, you have the right to do so.
So what is the downside to using Hospice services?
Based on my experience, I don’t know of any. In fact, the feedback from families is usually overwhelmingly positive. The biggest regret I hear from family members is, “ I wish we had done this sooner.”
Most hospice care centers also provide for ongoing counseling for surviving family members to help them cope with their grieving process. This is an amazingly important benefit.
So, if you have a family member who may be terminally ill, someone needs to have the difficult conversation with them about end of life care. If you are not able to do that, then arrange for your family physician to do so.
It is important that all of us, no matter how old we are or how healthy we are, to make known what we want, and don’t want, when it comes to end of life care. It is so very important to have a living will in place spelling out what you want so you alleviate the burden from your family members about making decisions on your behalf without knowing precisely what your wishes were.
Today’s subject matter is a heavy one indeed. But it is equally important that we consider these issues and not shy away from them, as difficult and uncomfortable as they may be for us to confront.
All of us will face these choices, for ourselves or someone we love.
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For more information, please visit National Hospice and Palliative Care Organization